Dying Inside

As I write this post, I wonder why I’ve waited so long to share. I know why, because it’s hard to put into words what celiac disease has been for me. When you hear “Celiac disease” you probably think, “Oh, she can’t eat bread.” It’s worse, much worse. It’s worse than having a waitress roll her eyes at you when you request a salad be remade because they put croutons on it. It’s worse than a family member making a snide comment about the “weird” food you have to eat. It’s worse than people saying “you must be so healthy because you’re gluten-free,” but they really have no idea the journey you’ve been on.

Back when my gut did what it was supposed to do!

When I accidentally eat gluten (it’s NEVER on purpose), I am a different person. I feel so tired, like my limbs are weighed down by weights. My whole body heats up, and I feel like I’m burning. Sometimes I throw up. All those things suck but they aren’t the worst part. The worst part is the emotional games the gluten plays with my brain. I start to think things I’ve never thought… terrible things. I start to pick myself apart. I hear a small voice in my head telling me I’m no good, that I’m a terrible wife, daughter, and friend. It’s my own voice. I cry but am unable to tell my husband why I’m hurting inside. It has given me a much deeper understanding of those who suffer with mental illness. My pet peeve is when someone says depression is selfish. Anyone with real depression does not want it.

This is about two years before diagnosis. I was already showing symptoms.

It’s hard. Anytime I eat at a home that is not 100% gluten-free I know that it is very likely I will be living with the consequences. I have a list of restaurants that I’ve gotten sick at that I will no longer eat at. It lasts about 72 hours with the third day being the worse. It then takes 2-3 weeks for my stomach to recover and I suffer from indigestion and diarrhea. The craziest part is that it only takes one little crumb. It only takes walking into a bakery and breathing in the air. It is not simply avoiding bread.

I was diagnosed at age 17. I noticed improvements with a gluten-free diet but it took years for us to learn how many things have gluten hidden in them. I also discovered there are many other foods my immune system responded to and over time the list of foods I avoid has grown. I struggled with depression and anxiety for years. I can honestly say it’s only been in the last two years that I’ve found some real answers. I don’t tell you all of this to get your sympathy, but I hope you will be able to better empathise with other people.

My little brother (Eythan) and I after a workout. Eythan also has Celiac Disease.

I’ve met many people who suffer from autoimmune diseases. They live quietly knowing most people won’t understand their illness. Sometimes they are laughed at, or told that they just have an allergy. Some people don’t look ill at all, but on the inside their body is dying. Lupus can go undetected for years but have life altering consequences without proper care. Hashimoto’s is often misdiagnosed and can results in the patients thyroid being removed. MS is on the rise and nobody knows why. Many people suffer terrible side effects when taking the medication prescribed for these illnesses. Something is causing the rise in autoimmune disease, and we would be careless to not research every possibility.

If you have lived in pain without diagnosis, advocate for testing. Research autoimmune diseases and other possibilities. You are not crazy, you just haven’t received help yet. Sometimes you will have to go against the grain to find what works, and that’s okay. No one ever learned anything new by doing the same thing over and over again.